Patients will have a lot of queries in their minds concerning their disease condition. Open communication with the doctor and health care team is crucial in making informed choices regarding cancer treatment and care. Below is a list of questions patients can ask their healthcare team regarding desmoid tumors. Patients are also encouraged to ask additional vital questions relevant to their condition.
Patients are advised to take a family member or friend while going for appointments to note everything that the doctor recommends and prescribes; and as a source of support.
Questions to ask regarding desmoid tumour diagnosis:
- What is my desmoid tumour condition?
- Where is the actual location of the tumour?
- What is the grade and stage of my tumour? What does that indicate?
- How aggressive or advanced is my tumour condition? Is it invading vital tissues and organ structures?
- Could you explain in detail my laboratory test results or pathology reports?
- Could you explain my diagnosis in detail?
- Could you recommend a desmoid tumour specialist with whom I can consult?
- Should I seek any second opinion or additional consultation? Could you recommend any other physician with whom I can talk?
- Do I need to be checked for FAP?
Questions to ask regarding choosing the desmoid tumour treatment plan:
- What are the available treatment options to treat and cure the desmoid tumour condition?
- Which treatment strategy would you recommend and why?
- Am I eligible to avail of clinical trials? Are there clinical trials available for my condition? If so, where can I find them? How can I get more information about clinical trials?
- What is the aim of each treatment strategy? Is it to destroy the tumour growth, make me feel better, or both?
- What should I expect post-treatment?
- Who are the members of my health care team? What are the role and duties of each member?
- Who will be leading the whole treatment plan?
- How can I manage the cost of cancer treatment and care? Where can I seek help?
- Are there any support services available for my family and me? How do I get in touch with them?
- Whom or where should I consult if I have more questions and queries regarding the treatment of desmoid tumours?
- If I am worried about managing the costs of medical care, who can help me?
- What are support services available to me? To my family?
- If I have questions or problems, who should I call?
Questions regarding Managing and relieving side effects:
- What are the possible long-term and short-term side effects of the treatment? Explain in detail.
- Will this treatment affect my day-to-day life and activities? Will it interfere with my ability to work, exercise and perform other usual tasks?
- Can this treatment affect my sex life? If so, in what way and for how long?
- Will this treatment affect my ability to conceive and have children? Should I consult a fertility specialist before beginning the cancer treatment if that is the case?
- What steps would be taken to manage and relieve the probable side effects of the treatment?
- Will post-treatment care focus on curing the side effects of desmoid tumour treatment?
Questions to ask regarding active surveillance of the tumour:
- In what way will the desmoid tumour be monitored?
- Should I observe the tumour behavior and not go for any active treatment at the moment? If so, what is the reason?
- What happens if I don’t start treatment right now? Can the situation become advanced or complicated?
- How often will I need to consult the doctor to get examined?
- At what stage should I begin active treatment? How will tumour variations indicate that it is time to treat the disease?
- Will I require a second set of CT or MRI scans to see whether the tumour may shrink?
Questions to ask about having any surgical procedures:
- Is surgery a part of my treatment plan? Is it necessary to treat my disease condition?
- What types of surgical procedures are performed to treat desmoid tumours?
- Is a biopsy required before surgery?
- Instead of surgery, can we use a chemo procedure or radiation therapy to destroy the desmoid tumour growth?
- What is the goal of the surgical procedure? Is it to remove the tumour wholly?
- What type of surgical procedure is available to treat my disease condition? Which one would you recommend and why?
- What is the chance that the desmoid tumour may recur even after a successful surgery?
- What is the duration of the surgical procedure?
- What is the experience of this surgeon in handling desmoid tumour cases? How many surgeries has this surgeon done in the past?
- How long will I need to spend in the hospital or care facility?
- Could you describe what my treatment recovery would look like?
- Whom or where should I contact if I experience any side effects due to treatment, and how soon?
- Can these surgical procedures cause any side effects? Could you explain the short term and long-term side effects, if any, of surgery?
- Will I require rehabilitation services post-surgery?
- Will I need to undergo any treatment before or after surgery?
Questions to ask regarding radiation therapy:
- What is the aim of radiation therapy?
- Are there different types of radiation therapies? If so, which type would you recommend and why?
- How much experience does this radiation oncologist have in handling desmoid tumour cases? How many patients has he treated so far?
- What is the duration of the treatment?
- Where would this treatment be conducted? At a hospital or a clinic?
- For how long will I need to continue this therapy?
- What all side effects should we expect during and post-treatment?
- Explain both the short term and long-term side effects of radiation therapy?
- Whom or where should we consult if we experience any side effects or new symptoms?
- What are the ways to prevent and manage these side effects?
Questions to ask regarding the use of medicated therapies like targeted therapy or chemotherapy:
- Can we use medicated therapies in treating my disease condition?
- What are the types of therapies available? Explain.
- Which therapy type would you recommend and why?
- What is the aim of each therapy?
- In what mode this therapy would be administered? Through a pill or an IV?
- Where would this treatment be conducted? In a hospital, clinic or at my home?
- For how long am I expected to continue this therapy?
- How experienced is the medical oncologist in handling desmoid tumor cases?
- Should I try any clinical trials?
- What all side effects should I expect during and post-treatment?
- Explain both the short term and long-term side effects of medication-assisted therapies?
- What are the ways to prevent and manage these side effects?
Questions to ask regarding planning the follow-up care for desmoid tumor:
- Is there a chance that a desmoid tumor may recur back in the body? If so, what is the chance?
- How do we treat such an issue of tumor recurrence?
- Should I watch for specific symptoms or signs that may indicate a possible cancer recurrence?
- What follow-up check-ups, tests and scans would be required to analyze my health condition?
- How long will I be required to continue this follow-up routine?
- Who will be leading my follow-up care?
- Can I get a summary of my treatment and survivorship care plan to keep in my records for future reference?
- Are there any survivorship support services available for my family and me?